IVF on the NHS(9 Posts)
This is an information post on my experience doing IVF through the NHS in Wandsworth, London. A bit long but this was something I would have liked to read before it all started.
I am 30 and was entitled to one round of funded IVF. This was my second cycle and was actually unsuccessful but I thought the info on timelines would be helpful to others.
I'm lucky enough to have private health insurance so after a year of TTC but not having a period (and my skin and hair going crazy) I went to a gynaecologist. Several scans and blood tests later, I was diagnosed with PCO. At the same time, through the NHS and on the advice of my gynaecologist, my husband did a semen analysis test and found that he has a very low sperm count (<2m). So by Nov'15 we were told that we would have to do IVF to have a child.
We decided to follow up both privately and through the NHS. Our hope was that it would work privately and then we wouldn't have to use the NHS but that didn't work out.
Dec'15 - Had a meeting with fertility clinic to agree treatment and confirmed we would need ICSI. Through the NHS, we did blood tests for HIV and hepatitis.
Jan'16 - Started on short protocol (Merional and Cetrotide). Initially lots of follicles grew but then they remained small.
Feb'16 - Extracted 4 eggs, 3 could be injected but no fertilisation. Failed cycle
Dec'15 - Based on our PCO and low sperm count, the NHS GP referred us to the NHS for assisted conception. We received a letter in the post with log in details so we could go online and choose our hospital and a meeting time. All hospitals in our area had a 17 week wait.
Mar'16 - Had a meeting with St. George's where they went through our full history, test results, ICSI treatment details and the doctor confirmed that we were eligible for treatment on the NHS. We provided copies of all of all doctors' letters and test results. We were told the wait for treatment in Wandsworth was two months and it would be done in St. Helier's.
May'16 - St Helier's called to make an appointment. They told me that we would have one appointment with the doctor and then approximately one month later have a meeting with a nurse and start our treatment.
June'16 - Three months after our St. George's appointment, one month longer than expected, we had a follow up meeting with the NHS. We were excited for this meeting as we expected to have our treatment confirmed. However, the doctor did a repeat of everything that we had gone through in Mar'16 and hadn't read (or maybe had not even received) all the results etc. that we had already provided.
The doctor went through an explanation of the short protocol and the long protocol and explained the factors the consultant uses to decide the protocol to use.
We were also told for the first time that we had a choice of hospitals in Wandsworth and did not have to use St. Helier's. The choices were transport IVF with St. Helier's and Kings (treatment in St. H and then embryology in Kings), full IVF in St. Helier's (they were opening their own embryology lab soon), full IVF in King's, Chelsea & Westminster, Guy's and St. Thomas's or Kingston. This was frustrating to only be told this information now as we could have researched the hospitals. We looked at the results from HFEA online and for our age group, the results are all very similar. If we wanted to move hospital, we were told this would only add a two week delay. I called C&W hospital to see if 'a two week delay' was realistic but they said that if we were officially reassigned to them, their next available appointment was 2 months away. Guy's and St. T's seemed to have less of a wait but as we were keen to get started, we decided to stick with St. Helier's.
We were given a ton of forms to fill out about welfare of a child, our medical histories etc. and also lots of helpful reading material.
After this meeting I emailed St. Helier's with all of our test results again so that they'd have them to refer to.
End-June'16 - The fantastic NHS administrator organised our next appointment for us via email as we were away. Very efficient! She also asked for a copy of our case file from our private ICSI attempt. This is something we should have probably asked for ourselves but you're not thinking straight when ICSI fails. It would have been helpful if the NHS had asked for this earlier in the process as it takes a while to get.
Met with a NHS nurse manager to go through our paperwork, provide copies of our passport for ID. Again, the nurse did not know our medical or ICSI history so we went through it again which we were happy to do. As my period was expected early July, it was too late to be organised for then so we agreed on an August start date. Hubbie also asked to do another semen analysis.
Mid-July'16 - Asked to do another ultra-sound to check extent of PCO and was in two days later to do it. Doctor thought she saw a fibroid and wanted to check it out further before we did an implantation. She said she'd refer me for a hysteroscopy and it would take max 2 weeks.
End-July - Receive a letter with hysteroscopy date in 6 weeks time. Am told that even if the hysteroscopy shows nothing, I have to have a normal period after it before I can start treatment. I know they're being cautious but very frustrating that the doctor did not explain the impact of the hysteroscopy to me and that this would effectively delay us by 2. 5 months.
Early-August - Get a second opinion from a private gynaecologist on the suspected fibroid. Am told there is no evidence and my uterus looks good. Agree with NHS to go ahead!
Mid-September - Treatment starts! 13 days of medication overall. Bloods on day 6 and day 9 and scans on day 7 and day 10. The staff answered all questions I had but never overwhelmed me with information. Collected 16 eggs, 12 mature and ICSI done. Zero fertilisation.
We were really shocked and upset by this failure. Unfortunately failure on this many eggs suggests a bigger problem. Next steps are more detailed tests before we go again. Third time lucky hopefully!
- You can see from our timeline that from referral to treatment was 9 months which is not that bad. However, we were constantly told inaccurate waiting times e.g. in March told we'd be starting in May. So I'd advise anyone else to be patient and double any waiting times given so you can manage your expectations.
- Even if you're on a waiting list, get all the blood (rubella, HIV, Hep B, Hep C & syphilis), semen and any other tests required while you're waiting so you know there are no issues. You might end up re-doing these if it's more than 3 months before you have your treatment.
- Bring copies of your important test results, referral letters etc. to any meetings and have a copy stored on your email so that you can produce them quickly. This will prevent any delays.
- My sister is a doctor and she suggested doing a one pager of our histories as staff don't have time to read everything and a one pager showing timelines, official diagnoses details, sperm count etc. will help to make meetings productive.
- Don't be afraid to ask questions, push back or get a second opinion if you can afford it.
This is really helpful! Especially for someone who thought it would just 'start' once referred.
Could I just ask - we are having to wait until it is 2 years since starting to try as this is one of the requirements for the Bristol area. The only thing I thought though that might get us on to be referred quicker may be that my husband has had semen results showing very low count and motility. We got these tests done privately so his Dr hasn't seen them, and we decided ourselves to get healthy and do another test in 3 months. We are at the 3 month point now and I think he should go to his GP now to get another test. I'm not sure whether you know, but if these results come out as low again, do you think they will refer quicker? Not needing to wait until January?
No worries if you don't know, I just saw from your timeline above that you had a similar situation.
Just to give you an indication of how long we have had to wait....
Went to the doctors January of this year and had our first appointment at the fertility centre last week. My DH has less than favourable sperm health therefore they have referred us for ICSI. Although it seems like a long time from initial appointment to now, we have almost ben fast tracked as they can pinpoint our issue to my DH, and therefore they said it is not worthwhile doing further tests on me.
With all of that said, I completely agree with OH in that waiting times need to be doubled in between appointments, as our last appointment at the Gyno department was the end of June. So pretty much waited all summer for our actual fertility appointment.
Either way, it's a waiting game. But keep in mind this is just my experience and we have been comfortable with the waiting as we are actually remaining quite calm as we go into this process.
I hope this helps Serena
It really does - thank you. I think all of the advice I have received just today has given me (and him once I tell him) a kick up the bum to get on with it!!
This was really useful londoner
We have had our first private consultation and I expect we'll have to do iui or ivf, not that we can afford it
It took me a year just to be referred to a gaeno before she diagnosed pcos. Gaeno now has me on metformin and clomid and if no pregnancy after 6 months I will need ivf. I've had to take all my blood tests three times over, and also had to have an ultrasound/transvag & hsg prior to gaeno referral. Was told the clinic would want to do all these tests again.
Londoner123 did you end up getting a successful round in the end? Just been referred by GP for tests at Guys (Jan'19), no idea when I can expect to start but setting my hopes on Sep'19.
Just wanted to say thanks Londoner123 for setting out your experience. That was probably the most helpful and informative post i've read about the realities of the IVF referral process.
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